International Bioethics

UN International Declaration on Human Genetic Data

International Bioethics

The International Declaration, as finalized by the Meeting of Governmental Experts in June and by the Working Group set up by Commission III at the 32nd General Conference, was adopted unanimously and by acclamation by the General Conference on 16 October 2003.

The General Conference,

Recalling the Universal Declaration of Human Rights of 10 December 1948, the two United Nations International Covenants on Economic, Social and Cultural Rights and on Civil and Political Rights of 16 December 1966, the United Nations International Convention on the Elimination of All Forms of Racial Discrimination of 21 December 1965, the United Nations Convention on the Elimination of All Forms of Discrimination against Women of 18 December 1979, the United Nations Convention on the Rights of the Child of 20 November 1989, the United Nations Economic and Social Council resolutions 2001/39 on Genetic Privacy and Non-Discrimination of 26 July 2001 and 2003/232 on Genetic Privacy and Non-Discrimination of 22 July 2003, the ILO Convention (No. 111) concerning Discrimination in Respect of Employment and Occupation of 25 June 1958, the UNESCO Universal Declaration on Cultural Diversity of 2 November 2001, the Trade Related Aspects of Intellectual Property Rights Agreement (TRIPS) annexed to the Agreement establishing the World Trade Organization, which entered into force on 1 January 1995, the Doha Declaration on the TRIPS Agreement and Public Health of 14 November 2001 and the other international human rights instruments adopted by the United Nations and the specialized agencies of the United Nations system,

Recalling more particularly the Universal Declaration on the Human Genome and Human Rights which it adopted, unanimously and by acclamation, on 11 November 1997 and which was endorsed by the United Nations General Assembly on 9 December 1998 and the Guidelines for the implementation of the Universal Declaration on the Human Genome and Human Rights which it endorsed on 16 November 1999 by 30 C/Resolution 23,

Welcoming the broad public interest worldwide in the Universal Declaration on the Human Genome and Human Rights, the firm support it has received from the international community and its impact in Member States drawing upon it for their legislation, regulations, norms and standards, and ethical codes of conduct and guidelines,

Bearing in mind the international and regional instruments, national laws, regulations and ethical texts relating to the protection of human rights and fundamental freedoms and to respect for human dignity as regards the collection, processing, use and storage of scientific data, as well as of medical data and personal data,

Recognizing that genetic information is part of the overall spectrum of medical data and that the information content of any medical data, including genetic data and proteomic data, is highly contextual and dependent on the particular circumstances,

Also recognizing that human genetic data have a special status on account of their sensitive nature since they can be predictive of genetic predispositions concerning individuals and that the power of predictability can be stronger than assessed at the time of deriving the data; they may have a significant impact on the family, including offspring, extending over generations, and in some instances on the whole group; they may contain information the significance of which is not necessarily known at the time of the collection of biological samples; and they may have cultural significance for persons or groups,

Emphasizing that all medical data, including genetic data and proteomic data, regardless of their apparent information content, should be treated with the same high standards of confidentiality,

Noting the increasing importance of human genetic data for economic and commercial purposes,

Having regard to the special needs and vulnerabilities of developing countries and the need to reinforce international cooperation in the field of human genetics,

Considering that the collection, processing, use and storage of human genetic data are of paramount importance for the progress of life sciences and medicine, for their applications and for the use of such data for non-medical purposes,

Also considering that the growing amount of personal data collected makes genuine irretrievability increasingly difficult,

Aware that the collection, processing, use and storage of human genetic data have potential risks for the exercise and observance of human rights and fundamental freedoms and respect for human dignity,

Noting that the interests and welfare of the individual should have priority over the rights and interests of society and research,

Reaffirming the principles established in the Universal Declaration on the Human Genome and Human Rights and the principles of equality, justice, solidarity and responsibility as well as respect for human dignity, human rights and fundamental freedoms, particularly freedom of thought and expression, including freedom of research, and privacy and security of the person, which must underlie the collection, processing, use and storage of human genetic data,

Proclaims the principles that follow and adopts the present Declaration.

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